It’s 1:30am and I’m sitting upright in bed with my wife telling me that I’m ill (she had witnessed me convulsing and frothing from my mouth having a seizure). Feeling fine I turn to her and explain that I am fine, and ask why she is on the phone. The phone is passed to me and I hear the voice of my parents on the other end, telling me that I am not well! Not your average middle of the night discussion…

2am comes and the doorbell goes, my response is “Who is that? They’ll wake up the children”, so I angrily head downstairs, fling open the door and find two Paramedics in full green asking how I am:

Paramedic: “Are you OK sir?”

Me: “I’m fine, what are you doing here?”

Paramedic “You’re not well”

Me: “I’m fine”

Paramedic: “What day of the week is it sir?”

Me: “Errm…” followed by a long pause and realisation that maybe there was something wrong with me, as I sat down on my bottom stair.

Into the back of the ambulance and away with me to the hospital, for what would be a significant number of tests to find out what was going on with this 35 year old, healthy man. To be met with normal results and a referral to a neurologist, just to be safe.

Neurology

A part of medicine I didn’t have much experience with, other than knowing its to do with the brain. Therapy being the only thing that I did at that time, to do with the brain. 

I was told the wait for an appointment through the NHS would be a number of weeks.

I must stress this is not a dig at the NHS, I believe they do an amazing job day in, day out. 

Fortunately I had PMI (private medical insurance), which meant that I could then see the Neurologist in 2 days.

Appointment made and visit had, with a slip of paper and instructions to go and have an MRI the next day. All looked normal. I remember being in the office the next day talking to a colleague, she was saying “you’ll be fine, you are really fit and healthy (I was running 10kms most lunchtimes) you don’t need to worry”, and I let myself believe that, which was unlike me. Always plan for the worst, and hope for the best was my usual starting point. Yet I’ve always had this self-belief that things work out OK in the end.

MRI Scanning

If you’ve never had an MRI, then you won’t know. If you have, you’ll be imagining a metal magnetic tube with a board that slides in and out of its centre, and then there is the noise! Imagine someone with a club hammer smashing the side of a metal tube mixed with a metallic screech. They give you ear plugs and headphones designed to shield you from the noise, these are about as effective as draping a thin doily over your ears. And you can’t move! So, your head gets wedged into a medieval style frame that is bolted down around your face. It’s not for the claustrophobic individual.

Then the noise starts, and the 30 minute scan begins. Bang bang bang, screech, the rhythmic sounds crescendo towards the last minute. I was slid out and sent on my way. It was August, the sun was out, and I had the day off work, so that meant I would be out on my bike for the afternoon. I get a call from the MRI department, asking me to come back in that afternoon, as they have forgotten to do a contrast scan (contrast is a liquid that gives better images of the brain), an indicator that now I know wasn’t good, but then had no idea. So, the bike goes back into the garage and I head back to the hospital to have an injection and another, shorter MRI scan.

Back to Neurology

I remember thinking while booking in my return visit with the neurologist, why can’t they give me an early appointment, instead of one in the middle of the day which interrupts the working day. As that thought crossed my mind my phone rang, and it was the neurology department offering me an appointment next morning at 08:30 at the local private hospital. 

As I merrily headed down to the hospital for my earlier neurology appointment, with my colleagues words in my head (“you’ll be fine Neil”), I remember it was a beautiful sunny day, so headphones on and pleased that it was a bit of exercise to start the day.

First in, he sat me down and went to his bag to take out his Ophthalmoscope (an instrument designed to examine the eye, in particular the retina), looked into my eyes, then with a confused look he pulled up my scan, whilst muttering to himself “why is there no pressure build up?”.

I was then shown the scan!

I am no doctor, but I knew that it didn’t look good. I think my response was “F**K, how long have I got?”, and the rest of the dialogue that followed I still can’t recall.

The next part I remember is stepping out of the hospital, and calling my parents to tell them the news, as the phone rang I just wanted my dad to answer, as he always did, for some reason I could tell him easier than my mother. Then of course my mother answers with a cheery “Hello darling, how was your appointment?”, this being the first time I said it out loud, through the tears I said “mum, I’ve got a brain tumour!” then silence.

Support and Understanding

I am blessed with my family, and my parents were amazing through this phase in my life, along with my wife and my two daughters, oh and my therapist. And that is what got me through the days that followed…

Read Part 2 – Diagnosis

Part 1 of a 4 part series to raise awareness for Brain Tumour Awareness Month, written by Neil Ladgen